NHS: Specialised Services

Lord Palmer of Childs Hill Excerpts

Wednesday 18th July 2012 Lords Chamber

[Lord Palmer of Childs Hill]

My Lords, the noble Lord, Lord Patel, is indisposed and we wish him well.

I thank my noble friend Lady Jolly for initiating this debate and for giving a detailed introduction to the problems mentioned in its title. My concern is specifically with the treatment of Gaucher’s disease, the genetic disease mentioned by the noble Lord, Lord Turnberg. It is the most common lysosomal storage disease. It is caused by hereditary enzyme deficiency. Patients in the UK, together with patients suffering from other lysosomal storage disorders, or LSDs, are treated at nationally designated centres run by the Advisory Group for National Services and I am grateful to my noble friend Lady Jolly for reducing that to AGNSS, which saves me from repeating this long name, or the initials. There are eight nationally designated treatment centres in England serving these patients.

Since 2005, the treatment of LSDs has come under the management of AGNSS, which has allowed LSD patients to benefit from national designation with respect to assessment, diagnosis, clinical management of the disease and assessment of the therapies. The centralised management of LSDs previously mentioned by the noble Lord, Lord Turnberg, and my noble friend Lady Jolly is the creation of eight nationally designated centres and has had the following key benefits.

First, there has been provision to patients of access to experts in the management of these rare diseases. Without this access patients have suffered misdiagnosis, as the noble Lord, Lord Turnberg, said, and inappropriate treatment. Secondly, all patients in England—and it is England that we are talking about—have had equity of access to therapies. Thirdly, a nationally funded service has provided budgetary transparency for the NHS, ensuring the efficiency and effectiveness of therapies and avoiding unnecessary costs. Fourthly, the ability to launch national tenders for therapy and home care has resulted in further cost savings. Fifthly, there has been the development of national clinical guidelines defining diagnostic treatment and management criteria.

The Government have determined to disband AGNSS as part of the establishment of the NHS Commissioning Board, as has been referred to by other noble Lords. It is not yet clear how this will work and whether this service for the assessment and management of patients with LSDs will remain a distinct body. The potential disbandment of AGNSS and the subsequent division of the assessment and management of rare diseases raises significant concerns that the issues faced by many LSD patients prior to national designation will resurface. These will include delays in access to diagnosis and treatment, regional inequalities and inconsistencies, misdiagnosis and inappropriate disease management, wasted resources in the NHS, and the separation of clinical management and appraisal of therapies.

The current service is envied around the world and in its existing form is an example of the NHS at its best. In other branches of the NHS we are encouraged to create centres of excellence, in terms of heart treatment, heart attacks, strokes and the like. Many hospitals are ceasing those services—to have centres of excellence—but the rationale for them should apply to these rare diseases as well.

Can the Minister assure patients benefiting from centralised commissioning arrangements provided by AGNSS that they will continue to do so in any new arrangements and that there will not be a break-up of the existing services? Can the Minister confirm that the new NHS Commissioning Board will retain a dedicated budget appropriate to meet the needs of LSD patients currently being treated, with provision for potential additional funds for new therapies in the course of development? Can the Minister give an assurance that the new arrangements will not see a return to what is called postcode lottery for treatments of patients with rare diseases? Does the Minister agree that rare diseases requiring specialised services cannot be treated in the same way as more common conditions, and that structures such as AGNSS need to be put in place to ensure that patients continue to be properly and appropriately managed and treated by the NHS?

Finally, the chairman of the European Gaucher Alliance, which represents patients’ groups from 36 countries, tells me that the current structure for the delivery of healthcare to Gaucher’s patients is envied around the world and is the inspiration for their organisations. I hope that the Minister can provide an assurance to the House that this type of service will continue.